Forgive my unusual reticence but I want to recognise at the outset that this post is addressing an issue which is deeply personal and emotional for those affected, and that I have no proper expertise to justify me wading in. But after a lot of thought I concluded it was better to risk my views being wrong than simply to avoid the issue…
When something surprising happens on three occasions it may be time to question the assumptions which made it surprising in the first place. The surprise has been three acquaintances of mine who have, in way or another, defied terminal cancer diagnoses. In one case the person appears to be in long term remission and the other two people – while still terminally ill - are enjoying a worthwhile quality of life well beyond the prognosis they were initially given.
Although every case is different and each involves great individual courage and determination, there are also certain aspects in common. The patients and their loved ones went to great lengths to make sure they were genuinely getting the best advice and treatment available. Each person - being educated, middle class and reasonably well off - had an attitude of mind and a variety of resources which made it possible for them to challenge the original pessimistic diagnosis. In none of the cases was it simply that the patients threw money at their condition, much more significant was mining the internet and personal connections to find doctors with a particular interest and expertise in their specific condition.
It could be that these cases are exceptions. It might also be that the NHS errs on the side of pessimism when it gives terminal diagnoses, not wanting to add false hope to an already tragic situation. But there is another, more structural, explanation. People become doctors and nurses because they want to save and improve lives. The NHS is getting better - as are all developed world health systems – at treating cancers where there is now a good chance of survival beyond five years. For example, breast cancer survival rates for older women have improved substantially. The NHS is also getting better at empowering people with long term chronic conditions so that they can be more active managers of their own conditions.
In these cases NHS staff are saving lives and – in the case of chronic disease management - saving money through better forms of care. But these motivations are much weaker when a cancer diagnosis is terminal. By definition the person is not expected to get better, and for a cash strapped service the thin possibility of extending a diminished quality of life for a comparatively short time may not seem worth pursuing in the face of other pressures. These are some of the issues raised recently in the case of terminally ill Janet Tracey whose husband claims that doctors at Addenbrooke’s hospital, Cambridge, twice put ‘do not resuscitate’ orders in his wife's medical notes despite her demanding it be removed after the first time.
The idea that structural, incentive-related, reasons lie behind undue fatalism towards people with apparently terminal conditions may be reinforced by observing the converse experience in the USA. Because many patients there are coved by medical insurance plans, which in effect offer a blank cheque for treatment, concern has been expressed at overtreatment, as people are subject to painful and invasive interventions with very limited chances of success.
If – as the experience of my friends strongly suggests - patients with terminal diagnoses who have personal resources are systematically able to extend their life beyond the expectations offered by the NHS, the obvious question is; ‘what can be done for those without such resources?’ How could they be supported and given what is surely their right – a chance to pursue every reasonable avenue before they accept death? Every year hundreds of thousands of people are given terminal cancer diagnoses. How many of them are being robbed of the vital extra time to organise their affairs, be with loved ones, or even fulfill lifelong ambitions?
The answer may be a specialist, independent service to which anyone with a terminal diagnosis can turn for expert advice and advocacy. Such a service would need clinicians at the helm, particularly to engage their medical colleagues, but could be largely staffed by people with a background in medical research or the pharmaceutical industry.
Each of my friends is haunted by the knowledge that they would not be alive today if they had not fought as they have and it leaves them with an understandable suspicion of future NHS prognoses. So, even if the service is not able to offer any more hope than the NHS, it will at least give patients and carers the invaluable peace of mind of knowing they really couldn’t have done more.
I suspect that if my post is noticed in such quarters, I will receive comments from people in existing cancer charity and patients’ groups saying that just such a service is on offer. It is certainly true that there are some great on-line resources now emerging, the best of which in the US involve doctors giving their time to join on-line conversations with patients about the latest treatments and trials.
However, cancer charities need to maintain good relations with the NHS and fighting hard for terminal patients’ rights may not fit easily with this. Macmillan is an amazing charity that does great work but - as I understand it – its focus is on care and support rather than advocacy or independent medical advice. Also, while there are good charities raising money for each into the cancers with the worst prognoses, the brutal truth is that patients' groups will be weaker in these areas for the simple reason that people do not survive very long with the conditions.
I can even think of an equitable way of funding such an advice and advocacy service. After an initial consultation patients and carers who decide they want ongoing support could be asked to agree to donate a small percentage of the patient’s legacy. Such a system would thus take more from the well off to fund a service almost certainly most needed by the poorest.
Most of us don’t like to think about terminal illness (indeed I suspect we even harbour a superstitious fear that to think about it makes us more vulnerable). And I know I am going way out of my own areas of expertise in writing this post, but when I think of how valuable is the extra time is that my friends have now earned and how hard they and their loved ones had to fight to win this time, then I’m sure the issues their stories raise deserve a wider airing.
Clare Gage FRSA Rachel Sharpe FRSA
Clare Gage and Rachel Sharpe, RSA Fellowship Councillors for the Central region, introduce themselves and outline what they want to create with Central region Fellows over the next few years.
Rebecca Ford, our Head of Collaboration and Learning Design, is hosting a three-month pilot learning journey to explore how the Living Change Approach can strengthen individual and organisational capacities to effect change. In this blog she explains why and how we are delivering the pilot.